Very Important Question???

[Guest guest]

So let me ask this question??? If I DO have Chiari and I DO have the surgery; am I going to get better and be able to do the things I use to? Or am I still going to have the headaches, and pain, and swallowing problems and balance problems and fatigue....etc???

I've heard so many folks say they arent any better; that I'm questioning whether or not to pursue surgery if I do in fact have this problem....

I guess I'm hoping for my old life back, is that not going to happen???

Would just like to know what folks that have gone through this suggest....

Thanks everyone,

[Guest guest]

Dear :

I am posting this to the group since we have had alot of new members

join recently.

Nobody can tell you what will happen if you have surgery, the only thing

you can go by is statistics. The numbers vary from study to study,

but in all cases, the majority of people had at least some improvement

of their symptoms after surgery. A smaller percentage stayed the

same, meaning that their symptoms stayed the same, but didn't get any worse,

either. And, an even smaller percentage continue to get worse.

Alot of the people who are here in this group are here for a reason-they

are still having problems and still looking for help. I think most

of the time when people on this group have a successful surgery, after

they have recovered, they no longer belong to the group because they are

fine now. I'm not saying everyone here is still having problems,

alot of people here (like me) are doing great, but here to help answer

questions for other people.

I had my surgery a little over a year ago, and am doing great.

I am not saying I don't have bad days, because sometimes I do, but it's

usually my own daggone fault for not listening to my body. Which

leads me to another point: Surgery for Chiari is not a cure-all,

the odds are you won't come out if it 100% cured, but surgery is a way

to improve your quality of life and get back some or most of the life that

you had before. You just have to learn to take it easier :-).

I hope this information helps you!

Sheila

wrote:

So let me ask this question???

If I DO have Chiari and I DO have the surgery; am I going to get better

and be able to do the things I use to? Or am I still going to have the

headaches, and pain, and swallowing problems and balance problems and fatigue....etc???

[Guest guest]

In a message dated 01/18/2000 1:04:48 PM Pacific Standard Time,

buff@... writes:

<< So let me ask this question??? If I DO have Chiari and I DO have the

surgery; am I going to get better and be able to do the things I use to? Or

am I still going to have the headaches, and pain, and swallowing problems and

balance problems and fatigue....etc???

I've heard so many folks say they arent any better; that I'm questioning

whether or not to pursue surgery if I do in fact have this problem.... >>

and all,

This is a very important question. There are no guarantees. But I can tell

you this...there are many members that have surgery, and regain their lives

back and move away from the list. Please keep that in mind when considering

the group as a representation of Chiari patients.

I can also tell you that it seems like the sooner you have surgery from the

onset of symptoms, the more likely you are to recover from them.

Chiari is a very individual thing. But if you are searching for a success

story, I can tell you that my daughter is experiencing a complete recovery.

She will be 10 months post op on the 26th.

Beth

Bakersfield, CA

(Alyssa 13, ACM1, decompressed 3/26/99, dura patch, laminectomy)

[Guest guest]

Reading all the success stories on Chip's Chiari Page really helped me decide

about my surgery - just a suggestion...

Lauri

[Guest guest]

Hi and all,

After reading the responses of my dear friend, (through much more than ACM)

Sheila, and who waxed so eloquently on the subject, I had to climb on my

soapbox.

When I was diagnosed with ACM, I was told to have the surgery, or I was painted

a very grim picture of my very short life and not so picturesque death within a

few short years. I was alone with my family, my youngest was 7 months old. I

wanted to see my children grow up.

I didn't have access to the Web. I didn't know there were people knowledgeable

about ACM anywhere. I said YES, even knowing all the possibilities. It was the

right choice. I had 5 totally symptom-free years.

Now I have the Web, and WACMA, and symptoms again. Through WACMA and the many

wonderful people in this group, I have seen three specialists. I will be doing

it again!

I know I have made the right decision for me. I know when I close my eyes on

February 10th that my life is in Dr. Heffez's hands. I know that I trust him

with my life, or I wouldn't be doing it.

Will it get rid of all my symptoms again, maybe, maybe not. He has already told

me that my chiari is so bad that he can't make it good, but he can make it

better. Will I have to alter certain things in my life no matter what, most

likely, yes, but he's already told me that.

All I can say is, find the right solution for YOU, one YOU can live with. If

surgery is your choice, find the right surgeon for you.

I'll get off my soapbox now.

Love and cyber hugs to all,

Philadelphia, PA

ACM1 45mm, small syrinx

Craniectomy, C1 laminectomy 1991

Surgery #2 with Dr. Heffez Feb 10th 2000